TRIPLE POSITIVE GROUP
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My bloodwork is good, so he says I'm sailing through chemo. I said it might look that way when you see me 3 weeks later, but week one I can't get off the sofa. Mouth issues (thrush)are the worst, hot flashes, fatigue. This round I did get extra fluids, helped a lot.
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rozem - you look great! My hair was down to the bra strap, I just cut it to the shoulder last week. It took me a while to feel like I could cut it and it would be ok, lol!
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Robin,
You are almost exactly a year behind me in TX- also did ACTH. You have been through so much in the past 9 months- and you're still in treatment with Herceptin. It's been so stressful. I think when you're still in the thick of it, as you are, I don't think you can expect to be normal- or to know what the full impact of treatment as well as the PTSD from the trauma of the whe thing--
you might find the memory comes back as the stress begins to ease and you realize you really are going to make it through the grueling marathon and perhaps as you go on Luminosity or do easy sudoku.
Give yourself a little celebration for having made it through so far- and compassion for your tired mind and body- which will start to heal. I remember about 6 weeks after radiation I was completely wiped out. I feel so much better a year later.
Hugs!
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Momwriter - thank you! Your words are encouraging. I will try to be a little more understanding of myself. I think it is difficult to remember that it truly is a marathon... I feel like I am getting close to being done with rads and that makes me want to sprint, forgetting that I still have active treatment going on.
I am glad you are feeling better!!
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SK - my hair is so FRIZZY seriously so bad especially in the heat - way dryer than b4, Im assuming its menopause the gift that keeps on giving!!
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debiann have you tried eating things that are citrisy? Maybe suck on some lemonheads. A friend of mine had suck bad SE on Taxotere that her MO switched her to Adrymicin. She didn't want to switch but her MO felt she didn't have a choice. If you can hang in there and ask about a reduction. September isn't that far away.
rozem you look awesomely cute. BTW my stylist says my hair is no longer frizzy, less frizz than before. He's been cutting my hair since the late 90'
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Husband bought me mouth wetting mints made with xylitol. No sugar & supposed to help get the mouth ph back to normal, discourging the thrush. Mouth doing much better today. Food still tastes bad. Funny when a food commercial comes on tv. I stare, imagining how good it would taste. I CAN almost taste it, I even salivate but alas, food still tastes like crap.I feel asleep last night wondering how much research is being done into these mouth and taste issues, lol. Sure, if you put it into perspective its a minor se compared to dibilitating neuropathy, but until you've experienced it, you can't imagine how devastating it is. I think I just want my life back to normal, and having this very basic function of eating so distorted just keeps reminding me that this SUCKS! This is my self centered, bitchy week. Next week I'll remember to be grateful for having access to medical care, a supportive family, ect..
On a brighter note, I had enough energy to give one of my dogs a bath this morning. I'm on the rebound!
My pooch Rambo.
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PBrain/Rozem: Great pictures.
Debiann: Rambo is adorable!
I was able to get my onc to stop my chemo at TX 4. The deal was I'm able to get back on the Herceptin which I had to stop due to the EF and I got back on but only made it to 10 Herceptin Treatments. Hope I don't regret stopping at 10 but I believe studies are still being done on what the right number of treatments is. Just hope it was enough!
Everyone have a great weekend!
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Debiann I love u pic of dog. That does take a lot of energy.
I'm sorry but every study that comes out says something new so Arlene please don't worry about this, I'm sure it will be fine.
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Hello ladies..
Debiann..rambo is cute! we only have fish here right now. My MO used to say the same thing about me and my labs, "oh you look great" and I would say well I feel like chit! I only had 4 TCH, I developed sever neuropathy in my hands as I have Raynauds too and I could not ice. I did have a small tumor, 1cm and was also 1a staged. I also had severe swelling in my legs, hard up to my thighs. I finished in April and am 9 weeks PFC. I did a detox and started exercising again. I am dairy, sugar and gluten free, I think that is helping with the achiness I was feeling too. I am on the mend. You will be too soon!
rozem...super cute hair! Frizzy or not....
Pbrain..your pic is great! You are so, so pretty. I am glad that you and fluff got to have lunch. I am about 2 hours north of you girls. We had some wicked rain that day. I am also so pleased about your 6 month clean exam! super great news!
susan..thank goodness you are away from that! I had a patient once who was there with a foley catheter in and was getting his toupe weaved on in the room and I was a young cute nurse then and when I came in he had his gown up, like I was supposed to find a 65 year old man with a tube in his penis and getting a toupe on as a turn on! Men can be so funny!
Debiann..I have just gotten used to no or minimal cheese. My DH is lactose intolerant and uses vege cheese and likes it. I have never tried
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Relay for life 2014 This is my daughter and her boyfriend and my grandson and I today we had great time
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That's a great photo of you and your family, Ang!
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Rozem, you are adorable!
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Debiann, Rambo's mug brightened my day! I bet he makes chemo a little bit easier to endure.
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I've been absent since June 11. We had to go back to Indiana to go through my mother's house one more time (it's on the market) and tend to some business things concerning her care, etc. Most importantly, we were able to spend time with her as well as our son who lives in the same area. We flew there and drove her car back home (long drive). On Tuesday morning of this past week we woke up in Winslow, AZ (not on the corner but in a historical and very quaint inn) to find that the incision on my recently reconstructed left breast (2nd attempt after radiation) was suddenly failing. We emailed a photo to the surgeon's office and they called back with their instructions: go straight to the emergency room in Phoenix for intravenous antibiotics and explantation the next day. So, that's what we did. We got to the ER with the rooftop carrier on top (didn't even have time to go home to unpack, my husband did that after I was checked through ER and admitted). It turns out the incision developed a pseudomonas infection, apparently pretty suddenly because it started scabbing up and looking quite different in appearance in a very short period of time. I had surgery on Wednesday and am back home again - flat on the left - not flat on the right. The next plan of action is a lat flap after the left side heals for several weeks.
It's always something and most of the time it's a roller coaster ride.
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aww geez lee I'm sorry. Upsetting and another surgery. Hope you're on the men's soon
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Debinann, watch the xyletol, sorbitol, etc. They are sugar alcohols, which we don't absorb in the gut (so sweet taste with no calories). However, the microorganisms just dig them and you turn into a gassy, bloated, methane-filled bag. Keep them to a minimum. I like Lago's suggestion of citrus. Maybe google AIDs therapies since so many of those patients suffer from thrush.
And maybe google Monel Chemical Senses Science Center in Philly. They do a lot of taste and smell research :-)
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I think the thrush has finally cleared up, but my mouth and throat feel very dry even though I have plenty of salvia. Everything tastes bad. Do the taste changes always resolve themselves when chemo is finished? I HATE THIS SE! I want something other than mouth issues next round.
Pbrain, I'm limiting the mints to one every 3-4 hours, so far not gassy. Tried some lemon drops too, they relieve the bad taste for awhile.
Just came from my stepson's bday picnic. Said to his wife, your food LOOKS wonderful, tastes like crap, but it looks great! Luckily we have a.good relationship and she understood what I meant,lol.
Nice pic ang, looks like a wonderful day with your family.
Yes, Rambo keeps me laughing, funniest dog I've ever owned. The DH says he's ugly at both ends,from his smooshed up face to his weirdly inverted tail which actually grows out of his body, corkscrews around one time, grows back into his rump and has a little thumblike projection coming out of the middle. Great dog, but lots of work keeping all the nooks and crannies clean.
Our pitbull, Chancee, is having a rough summer, suffering from inflammatory bowel disease. Very serious.
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LeeA that stinks but you have a plan moving forward so that's good. A friend of mine kept having issue with infection although she didn't do rads. Finally she did the flap. She's good and happy.
debiann I would cook your fish, chicken etc. in lemon, lime or orange. It isn't uncommon for citrus to taste good. Add it to your water too. I have never read or met anyone who's taste buds didn't return. I didn't have it that badly but when I did it was annoying. I can't even imagine what your dealing with mine was so minor.
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i want to see a picture of rambo's tail end,too, wow!
LeeA, i am so sorry that happened to you. take it easy for a while and heal up....
Pbrain! No more blue hair! wow, your hair is just so thick looking and growing like crazy! I am very impressed by your wise career moves.
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Lee I am so sorry you are taking yet another scenic detour
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Me too Lee! You have had enough. But Special K will tell you this is no picnic. My prayers!
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leeA - I'm so sorry this has happened to you! We are both flat on the left and have something on the right. Isn't it surreal to have this happen? It has been for me. We can be the half-flat twins. I'm glad we both have a plan of sorts.
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Special k and leeA so sorry for both of you.
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LeeA -- So sorry(((((( Hugs)))))0 -
LeeA - what a stressful time you have been having. Hoping this new plan puts you on the express lane to healing!
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leeA. So sorry about your implant trouble. I know i have been very vocal about my lat issues so I wont go in to all that here but i did want to give you an alternate solution to discuss w your PS. FG or stem cell transfer procedure to the rads breast. My friend had it done and her implant worked out great And no messing w muscle
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Hi everyone wow I'm sorry Lee to hear about u'r problems now. I really don't understand all this with recon of any kind. I'm on a few threads and more women have had trouble than not and some lots of it. Now I'm assuming all are going to board certified PS's and it's not like they walk into the operating room and say get the manual I haven't done this in a long time, so someone read it to me while I'm doing this. This is why I don't get it. It's a very common operation for most PS's and to have to do it again and again doesn't make sense to me---It's not like women just decided to do this after BC, they've been doing it for yrs and yrs. So why do so many women have to suffer from this well laid plan that was talked over and was no doubt shown how it was going to be done. Well too it's not like women say oh do whatever u want and if it doesn't work out do it again--u put u'r faith in this Dr. and it can go on so long. May cuz I just watched that new show Botched about people who have had all kinds of really bad stuff with lots of fixing that need to be done. And 2 Drs. fix all these things if they can. They have said no, but they seem to know what other Drs. did wrong right away. OK my silly rant is over and again I disclaim that I really don't know what PS do anyway.
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Debiann and Pbrain, one time - and I do mean ONE time - I felt like having a treat and bought a box of sugar-free Jelly Belly jelly beans. Good grief. What a mistake. I barely made it in the front door! Two words: never again.
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Pbrain, I love your new photo! You look great and SO MUCH HAIR! It looks so thick and healthy!
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SpecialK, I've thought of you so much in the last few days. Your post kind of reminds me of my husband's old saying about the two of us (meaning, myself and him): "together we make a half-wit" (he can say this jokingly because he's a mensa member - me, not so much). Yes, it is surreal. One day everything is cautiously optimistic and a few weeks later it's "get your @ss to the emergency room - your implant is showing." :-(
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Camillegal, just the other day I said the following to my husband: they can put a man on the moon but they can't fix a watch-battery sized hole in an incision on a radiated breast?? I guess it's delicate business, this reconstruction. I would tell you all the first words that came to my mind when I saw lefty this morning but it's just too crude for a message board.
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EVERYONE, thanks for the encouragement on the loss of lefty. I don't know why this bothers me so much yet I do know why it bothers me so much: I'm a Libra and even though I'm not into astrology (this is sounding like a Pina Colada song) I really hate it when things are uneven/off/unbalanced. Even when I returned home from the bilateral mastectomies I had the stale McDonald's hamburger buns but this is just so off, for lack of a better word. Of course, no prosthesis yet and it's summer so you know how that goes SpecialK and everyone else who has had a onesie/nonesie. If it was winter I could wear a sweatshirt and no one would know the difference but it's averaging 104-108 here so, Opus Dei leanings aside, I'm not going to wear a hair shirt or sweatshirt or anything else that's going to send my comfort level off the charts. This, too, shall pass. As you said, Bren, another scenic detour!
ETA: Rozem, I've taken a screenshot of your post and will google what you've suggested. Thanks!
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camillegal Medicine isn't a prefect science. Many times the surgeon doesn't know till he gets in there. And of course with radiated skin the "failure rate" (hate that term) is much more common with implants. It isn't unusual to have to go under the knife again.
LeeA being upset if valid and normal. You just want to be done. You're doing what your supposed to do but these extra journeys are preventing you from being done. Totally get not wanting to be uneven. But you will get t here eventually. Hang in there.
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leeA. Just so sorry you have to deal with this. My lefty was the bad one too. I didn't have rads though which makes failure much more likely. I wonder why they don't say anything to people before the decision. I'm betting that P'S never said that the failure rate was over 50 % .
But you'll get there. I was cave on left hand filled on right for 2 years. I just wore my cami's got the summer. With the light fluff. But perhaps the swimming pooffy might be more comfy in the real heat you have? Go search swimming poofy on this site. Might work.
Much love
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Half flat twins. I am sorry for the events-but the name is great!
PBrain-your hair is din-o-mite! My gosh you look about 27 and glowing! The photo-was it a just walked out of the salon-or are you hair talented also?
Taste and chemo. So weird. Everything tasted awful. Food and drink. And, sadly, most was tossed back almost as soon as I swallowed. But-I am one of those women who started vomiting @ conception and continued until delivery of the placenta. Four times. Actually five. Had a late miscarriage @ about 18 weeks. So I go major drugs for nausea. Kept my port accessed with every chemo had had rescue fluids 2-3-4 days after depending on how much time I spent on the bathroom floor. Am a nurse-so was easy to do @ home. And almost all of my friends have some sort of initials after their names-and many had access to my house. Pushed an IV pole around @ work with rescue fluids also. I also had problems with smells. Some of the foods that bothered me because of smell-I still associate with nausea-and am avoiding. But that happened with pregnancy also.
LeeA-I have taken so many "scenic detours" I am not sure anymore which way I was supposed to go. I am implantless so cannot relate to failed reconstruction. But. despite my typical sarcastic smart mouth-continuing to have PS x2 and BS discourage means I will never order great beautiful bras from Victoria again, will never joke about being a 36 long, and will always take mine off at night. That being said-I have avoided about 8 surgeries according to both PS I met with and confirmed with my BS. Neither PS would even discuss starting until I was close to the same health status prior to BC. Meaning off most cardiac meds and a LVEF at least above 50. Will have another ECHO this week. Last one was 40ish. Closer to the 30s than the 50s. But a bit > 6 months ago-and have been taking the plethora of drugs faithfully since last September when I was dropped kicked from Herceptin.
And, LeeA, I am still here despite the detours. Sarcastic smart mouth. Aged a lot. SEs that make me snarl. I am much less tolerant with BS. i want to spend any free time with those I love--not those that cause emotional harm. I tell people, in my opiniion, there are three advantages of being a grown-up. You do not have to eat things you do not like. You do not have to go on scary rides at the fair. And you do not have to spend time with people who embarrass you in public. I now add-after BC-time with anyone other than those you want to spend time with.
I always want to spend time with this group.
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Susan, I've spent so much time in anticipation of, recovery from or having reconstructive surgery that it sometimes seems downright ridiculous. As of today I now have the added experience of looking from left to right and from right to left and thinking "now what?" If I were to quit now, I'd have a period to put on at least one part of the sentence. There's a heady exhilaration at the thought of going back in one more time to have righty removed and just saying "I'm finished with all this." On the other hand, there's the time spent. It reminds me of how I used to feel when I contemplated divorce from my ex . . . "but what about all the time spent? The shared name on the checkbook? All the untangling of assets, time, memories, money, parenting, etc. etc."
After going through BC it seems like such an insane waste to spend one more minute of precious time being wheeled into an operating room for yet another procedure that might fail (and yes, with this second go round on the reconstruction I was warned there was a 50/50 chance of failure). I should have just had lefty removed in April and gone with a lat flap in six weeks but I had to go back to Indiana to satisfy an obligation and so I took the chance and here I am, eight weeks behind plus another six to twelve more to go.
I wonder what I would have done had I known in October 2012 what I now know in June 2014? Would I have chosen the no-reconstruction route? I was on the verge of no-reconstruction back then but the carrot was dangled that very first week in the breast surgeon's sterile white office: "insurance covers it." And yes, it does cover it but there are deductibles, out-of-pockets and all the time that you never get back again and time really does take on a different meaning post-diagnosis. As you put it: "after BC time." So many choices we never think we'll have to make until that day when we're staring down our fate on a radiologist's screen -- or that's what the moment of diagnostic truth was for me: a dark room with a glowing screen, a radiologist with downcast eyes, my husband and myself. Oh, and that word . . . tumor, as in "yes, it's a tumor."
I always go back to the quote I read in a blog not long after being diagnosed:
"I lost what my sister-in-law calls the luxury of careless living"
And then, when I'm feeling all PMS-y (poor me syndrome-ish) I fall back on "yeah, but you're still here so STFU and get on with it, sister susie" (LOL, my name is Lee but my father always called me Sister Susie when he wanted to make a point or get my attention! Did anyone else get that growing up??). I guess Sister Susie rolls off the fatherly tongue much better than Sister Lee which might be mistaken with sisterly :-)
Also, re:
"I always want to spend time with this group."
I agree . . . although I have drifted away from time to time.
This is the thread where I learned to live with it, in a manner of speaking. I couldn't have done it without the great women who have populated this thread over the years. Many thanks, as always.
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