Lumpectomy Lounge....let's talk!
Comments
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thank you everyone for the support and encouragement! I'm not going to let that conversation take up anymore space in my head but instead focus on the positive comments and advice here!
Sandy - I did donate my hair to a organization that makes and donates wigs to children. I was thinking about keeping some to make a cap but my DH encouraged me to donate it all. I am really liking my hair short - it takes me no time to style it. I'm thinking once it starts to grow back I might keep it short.
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Heathet, listen to the ladies here and tell your friends you don't want to hear any negative, scary stories. I am so sorry .
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Heathet - although I did have to be hospitalized twice, at no time did I come close to dying! Pay no attention to that downer. Chemo is no picnic, but follow your doctor's advice, be careful during the "low" days, and you'll get through it.
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Heathet That will VERY unlikely happen, I promise. As my onc and my infusion nurse would reassure me - you'll manage just fine. They weren't dramatic about getting chemo, but were responsive when I demonstrated side effects, if that makes sense. It's no picnic, but it's doable, especially if you're a relatively healthy person and take care of yourself overall. If you start to feel a bit funky, a walk in fresh air does wonders. Be kind to yourself and you will get through this without incident.
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Heathet, I agree with your decision to keep that hairstyle once your hair grows back. It makes all your features (especially your eyes, bone structure and smile) “pop.” Your earlier long, straight hair was hiding you, and reminded me of Joni Mitchell’s unflattering self-portrait on her “Clouds” album cover.
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Dear Heathet and Sloan: You both look beautiful. Heathet: Don't listen to horror stories. Good luck and hugs.
Dear Peggy: You are hilarious. I loved the, "died went to hell, then heaven and then lived" comment as well as all of the other funny snippets. I'm glad that your memorial went well. Good luck with the sale of your house.
Molly: My surgery was on July 22. Good luck.
Dear Poodles: I hope that the shingles goes away quickly. You have really been through the "wringer". Hugs.
Dear everyone else: Sorry that I am not commenting but I loved reading all of your posts and I wish all of you well. -
Dear Sandy: I missed the part (I don't know what else I missed as well) where you were diagnosed with the atypical nevus and that you have to have another biopsy. I didn't realize that the pathology report came back already. I am so sorry that they have to re-excise. I am praying that it is not melanoma. GOOD LUCK and hugs.
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Edit: Sandy, I'm hoping for a benign outcome on your biopsy. Why do all these stupid health issues get in the way of our fun?
Sloan, I am glad you're back! You look fabulous with your new hairstyle, you glamor queen, you! And I take it we are glimpsing a bit of the new kitchen in the background.
Heathet, first I want to say I love your new hair! You look very up-to-date! I hope mine comes out almost as well as either of you gals! My haircut day is tomorrow. Second, please tell your friend not to refer her co-worker to anyone else!!! There is no call for any of that fear-mongering! If you speak to an actual breast cancer volunteer, you could probably learn what percentage of women taking chemo end up on death's door with pneumonia. Very, very small I'm sure. And you may be a lot healthier going in to chemo than the woman who got sick. But I'm sure it's a good reminder to stay away from people during your low immune periods. I will be starting chemo next week, so we can both be in a June chemo thread.
Molly, I'm glad you have a firm surgery date now! One less thing to worry about.
1Step, good luck with the insurance battle. Nothing more annoying! I'm fighting one too, because somehow my gyn never "authorized" the biopsy back in December. Now I'm having zero luck getting that office to call me back. I might need to show up in person. Just what someone on or about to be on chemo needs to do, right?
Poodles, I hope you feel better soon from the shingles. I sympathize and definitely know the feeling of "it never ends".
Peggy, good luck with the cat. Wear long leather gloves and a long sleeve thick jacket! I got whacked in the face a few days ago by my DH's favorite cat when I was trying to look at a spot on his chin. I bled like a pig -- soaked a whole paper towel before it stopped. One hole under my left nostril, one in my upper lip and one in my lower lip. I doctored my holes up really well and used my favorite veterinary ointment. They are looking good so far but it was a good reminder to stay away from the cats (especially that one) during chemo!
I had my port placement today. It went very well! No intubation was needed, in fact I was fairly awake although heavily sedated during the procedure. The cute doctor was very willing to work with me on the placement so it wouldn't impact carrying my pack. One interesting thing: the reason they usually place the port on the opposite side from the surgerized side is so the port will not be in the field of radiation after chemo. (I always assumed it was some lymphedema-related reason.) That would have been my left side. But because I already had radiation, the doctor was able to place it on my right side, which is the easier side to work with. So far it is not feeling too bad.
Oh, one more thing. My GP's office called to say I am negative for Valley Fever. Great relief.
My apologies to anyone I missed. I will read more carefully when I have more time!
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thanks again everyone for all the support!
Poodles - I hope it's not shingles! I had those after my surgery. I had them just a little over 4 days before I went into my doctor. My GP still prescribed the anti-viral meds and they started clearing up quickly after that. Healso gave me a cream for the itching. My MO has prescribed the antiviral as a precaution during chemo. I'll take them before I start.
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Peggy,
So glad your celebration of Chuck's life went so well. I enjoyed reading about your day and your family. You will always be a Michigan gal no matter where you live. I now spend 6 months in AZ and 6 in Michigan. When in AZ, I still order pop and talk about the UP and then have to correct myself when I get those strange looks. Best of luck with your move.
Jo6202
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Heathet, what bullshit! Sorry, but people who do the scare thing make me so damn mad. listen, I had a very strong chemo the maximum dose that can be given, and I worked, rode my street bike 125 miles a week during chemo, kept three grandchildren under the age of five two days a week, entertained guests, etc. and never once, not once, thought about dying from chemo. Will it be perfect? Probably not. The funky taste thing sucks, as did getting folliculitis, as did getting stung by a bee during chemo, as did getting some mild neuropathy, and having an allergic reaction my first infusion that was handled in like five seconds by Benadryl. And here I am, one year after final chemo, and I don't remember a damn thing about it, other than it was mildly unpleasant.
Take care, post here about any concerns, and I guarantee somebody will respond with practical advice, not scare tactics. Doctors are really on any side effects, and no question is too insignificant to ask them.
I second finding the forum for the month you started and interacting with those people. My chemo March 2015 forum was my major source of support, and I love all those women, even though I have never met a single one of them in person.
You have got this, you will get through it one step at a time, one day at a time, and then it will be over and you can move on with life. Xoxo
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Jo, I was so pleased at how well the memorial (and whole weekend) went. Even better than I'd hoped. Best yet, the park ranger didn't show up to tell us we couldn't scatter Chuck's ashes in the lake. That's so true about pop and the UP. Have to speak English when out of Michigan
Moondust, glad the port placement went well. I'd be ready to throttle that Gyn who can't be bothered helping you get your insurance straightened out. My cat doesn't have claws (she came to us that way - I don't believe in de-clawing). So I just need to worry about teeth. I can get pills down her - it's just very interesting.
Sandy, thinking of you.
I'm sure I've missed people - please forgive me. But I'm thinking of all my BCO sisters.
HUGS!
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Heathnet, how awful! I'm sorry you had to experience that! I've had an offer to talk to someone who's been taking tomoxifen but I think she's having bad se's. I just really can't bring myself to talk to her. I have had better luck reading the boards here to become prepared. I'm currently following spring rads & the t train threads to prepare myself for my next steps. Love the haircut!
Peggy, I have 2 housecats. Cats are awful to try to make them take pills, claws or not. When mine were about a year old we moved 2 hours away. I got the tranquilizers but did not do dry run. One cat is quite a bit larger than the other. Gave them both the same dosage. Needless to say , one slept for 2 hours, the other meowed for 2 solid hours.
Poodles, hope it's not shingles.
Ejmann, how is post surgery? Still have the tenderness?
I have my first RO appointment in the morning, so I guess I'll find out my treatment plan. I still have the raw bruised feeling in my armpit and underarm. I'm using the tips you all have listed for relief from rads se. Avoiding skin to skin, tried corn starch & pinned a piece of fleece to my shirt to avoid the seams in the armpit, all of which is helping. Not exactly painful, just super annoying. And I think I've developed cording in the armpit that you've been talking about. Feel it pulling from the node removal sight over my armpit stopping at the edge of my arm. Doesn't seem to be limiting raising my arm above my head , but trying to do stretches throughout day. I guess I'll see what RO says.
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Trish, make sure you don't use anything (e.g. corn starch) before your rads each day. Afterwards okay. I'm small busted and didn't wear a bra all through mine. I also didn't use deodorant since the one acceptable one I was allergic to. Luckily I'm not normally stinky. The only move I've done (49 years ago), we did have 2 cats and the move was 5 miles so not traumatic (for the humans). 2100 miles is going to present challenges. I am hoping that using crates for the pets will be better than being enclosed in with the plastic carriers. Time will tell. I leave 2 weeks from Friday and I AM NOT READY!!!
HUGS!
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Ah, da Yoop! My previous band (first a duo, then a trio) went up there almost monthly, it seems (I can still visualize the US 41 speed traps outside Oconto & Peshtigo when I close my eyes). Mostly Escanaba & Marquette, though a couple of times in Munising and once in Grand Marais. There used to be a wonderful coffeehouse in Escy, 8th St. Cafe, which had great coffee and sound system, and even used to put us up in the TraveLodge. But when the owner went off to Iraq, the kids who were entrusted with it ran it into the ground--and then when he tried to get it up & running again the local economy tanked (and ASCAP demanded an exorbitant license fee). Dead River Coffee Roasters up in Marquette had to give up its live music for the same reason. (We did get to play the Hiawatha festival twice, though). Falling Rock Bookstore in Munising was one of our faves. But I haven’t been up there in seven years. My former bandmate married her longtime boyfriend and they retired up near St. Ignace (where they bought and restored a lumber baron’s house).
I have two kitties--like all those we’ve had, they have their claws intact. Unlike their predecessors, they are utterly unbribeable with cat treats, and vigorously resist getting their claws clipped. Heidi is fairly judicious using hers, but Happy loves to purr and knead on me, no matter how much or how little I may be wearing between his little needle-like claws and my skin. Trying in vain to find visiting groomers to clip their nails. Going to the vet for that can be really expensive--and Happy howls and yowls (Gordy swears he’d heard him say “Nooooo!” and “Home....NOW”) whenever we put him in the carrier. He’s never lived anywhere but indoors, with doting humans and at least one other kitty--and Gordy theorizes that in Happy’s mind, putting him into the carrier and then the car means we’re going to abandon him and nobody will ever love him again. There’s a groomer, Bark Bark Club, a couple of blocks away, but the only way I could ever get him there without major protest might be if I could get him to walk on a leash & harness....but once inside there, “oh, NOOO---DOGS!”
My skin re-excision is tomorrow at noon. Ironically, tomorrow evening I have to take two of my support group friends to a Survivorship meeting & party. I have a gig Sunday, and I’m just going to have to focus on having only one kind of cancer till I know further. “Severely dysplastic” or “highly atypical” moles with “dirty margins” are the most at risk of having an adverse change in diagnosis after re-excision (4-50% are confirmed as melanoma, acc. to various studies). I’m just hoping that whatever it is, they get clean margins, which means it’s in situ and I won’t need another SNB, much less further treatment. If they have to go deeper than another mm, I’m screwed.
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Sandy, I will be in your pocket tomorrow and prayers for clean margins.
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Trish: The tenderness gets better every day. I can pretty much sleep on my side and no problem. Seen my BS tomorrow to find out next steps.
Wishing everyone a wonderful rest of the week.
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good morning friends! Did you get a prescription for the compression sleeve? The surgeon mentioned to me after I developed the seroma that I should probably use a compression sleeve, however, I never thought to ask for a prescription. I am going to be doing quite a bit of traveling in the coming months and I'm concerned about swelling. I'm flying to Chicago in
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Sandy, you mentioned Oconto - my BIL lives in Oconto Falls, WI. Teeny weeny town. #1 son went to Michigan Tech in Houghton for awhile. Three of my BILs also went there. A bit too remote for me. I'm so citified
Good luck today. I'm bouncing around in your pocket (also known as dancing). What a busy few days you have ahead of you.EJMann, I still have occasional "annoying-ness" from my SLNB site. If I remember to stretch several times a week, I have no problems but apparently it is beyond me to remember something that simple.
Off to my last appointment with my PCP here. I will miss her. She's the best. She said I should come back for my regular check-ups. If it weren't so expensive, I'd consider it. I hate the thought of finding a new PCP and oncs.
Take care, Dear Friends!
HUGS!
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Sandy-in your pocket today. Been there as I was diagnosed with a melanoma (ultimately found to be in situ) just 4 months before my BC diagnosis. Sending you good vibes for clean margins and a b9 outcome.
Peggy -I'd sure hate leaving my PCP as well, but fortunately you have had a great one and know what you are looking for in Spokane.
Alice - glad the port placement went well. I saw the forecast for the valley for the next week or so. So miserably hot! Stay cool...I'll be in your pocket as you get your new hairstyle today and start your chemo next week.
Off to my first radiation treatment this afternoon. Looking forward to marking those days off on the calendar!
Heathet - you may have stumbled onto the worst "support" ever. Stick with the ladies here and put that woman on your #NOPE list
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Dear Heathet: Good luck with chemo.
Dear ItalyChick: Thanks for your post. It should calm Heathet's fears.
Dear Ejmann: I am glad that you are starting to feel better.
Dear Balding: Good luck with your RO appt.
Dear Sandy: Good luck tomorrow. I will be in your pocket.
Dear Moondust: Sorry about the insurance issues. That is stressful. My insurance company denied my bc surgery to my right breast (they paid for the left breast) because they said that this was cosmetic surgery. I would have been deformed if the surgery was not done. "Medically Necessary" is the key terminology. Good luck getting the gyn office to approve the bill. I am glad that your port placement went well. Good luck with chemo next week.
I know that I missed several people but I seem to have "chemo brain' even though I have not had chemo.
Have a great day.
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614 Insurance denied prophylactic removal of the other breast because it was considered "cosmetic?" I was told that once you had BC, you could do pretty much anything at anytime because it has to be covered by insurance. I know some docs discourage contralateral prophylactic mastectomy for women at lower risk, but my impression was that the choice was always yours to make - at ANY TIME, even 5 years from now.
Best of luck to all of those going into procedures and appointments!
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In your pocket Sandy!
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Good luck to you today, Heathet, Peggy, and Sue (and anyone else getting seen/treated today whom I may have omitted).
Created, my BS’ nurse gave me a prescription for the sleeve and told me to fill it after surgery but before my next long flight. I was on regular insurance, and if your company covers it (and the vendor accepts your insurance, which mine turned out not to), you will need an Rx. But as long as you get fitted properly, you can buy them OTC, even online. Medicare, however, doesn’t cover compression (though it and its supplements do cover some LE therapy visits if prescribed). The National Lymphedema Treatment act would mandate both insurance and Medicare coverage for compression sleeves (just as mastectomy bras and foobs are mandatorily covered now--even for lumpectomy patients, who are considered “partial mastectomy” patients). But it’s stalled in committee despite broad bipartisan support & even sponsorship, as a pawn in trade for defunding PP and repealing the ACA. Why do they have to set us off against each other???
Odd that even though I have both my breasts and they’re now finally the same size again, I can get a free pair of forms and two free pocketed bras to hold them (though no mx bra out there comes in a cup size big enough for “Thelma” & “Louise”)--which I DON’T need--whereas I have to go out of pocket for compression sleeves & gauntlets! (And, heaven forbid I need SNB if my mole turns out to be invasive melanoma, a compression vest for the inevitable truncal LE I will get).
If you don’t already have LE, compression should not be necessary for flights under 2 hrs. (Mpls-Chi is about an hour, not even long enough to finish beverage service). I didn’t, for the intra-European legs of my trip last Dec., though I did get a little hand swelling on my London-Geneva flight in March (but not going through the Alps on the TGV to Paris--the passes weren’t that high) when I didn’t wear compression. Now that I have LE, I wear it for all flights, and car travel to and stays at high altitudes (>2000 ft), especially when I know I will be playing guitar or otherwise exerting my LE arm. And when I know I’ll be visiting a skyscraper (as I did for Mother’s Day brunch at the top of the John Hancock), I will don it just in case--though it wasn’t so much the altitude of the 95th fl. as it was the rapid elevator ascent. I carry a set in my purse now just in case!
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Regarding compression sleeves....
createdonpurpose - you don't have to have a prescription for a sleeve, but sometimes insurance covers it with a prescription. Also, there are different amounts of pressure. When my arm swells I wear a Juzo, size2, 20-30mmHg (pressure). The one I love is a Mediven CCL 2, size 3. It doesn't bind or make me feel like I want to rip it off after an hour. If I had to wear one all the time, I'd buy a Lymphodiva because they are stylish. Sometimes docs don't know what to prescribe and the people at the store asked me, "What do you want?" The most helpful person was the LE therapist. But, if you're buying online or at the store, just measure your arm to get the right size, and I believe the 20-30 mmHG starts the "medical grade" for pressure. The lower pressure is what athletes wear during games or training.
Never wear it at night (risk of cutting off circulation). Start wearing it a couple hours a day the week before your flight so you're used to it. Take it off if your fingers become cold or discolor (as there is such thing as too much of a good thing). Leave on an hour after your plane lands or an hour after hard work (like shoveling). My LE said don't wear it during exercise, but wear it if you lift weights. (My doc said no lifting anything heavy ever, but some docs are okay if patients lift weights).
Good luck. The LE thread on this site is really helpful!
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Peggy - You'll be sooooo ready to go in 2 weeks! Did you ever give your 2 weeks notice and then was ready to go before your 2 weeks were up? A new adventure awaits you (and your kitty!)
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614!. There are lots of women with DCIS who get bilateral MX much less ILC! I would definitely find out if your doctor's office coded it incorrectly and appeal the decision with your insurance company. I am getting my remaining breast removed next month. I do not anticipate any trouble with my insurance.
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Sloan, no. I have never given two weeks notice. I'm lucky that I loved my jobs and stayed with them until the economy tanked. So this is all new. DH gave 2 weeks notice when he retired. I think I've just found something new to stress about since the memorial for DH is done and I was looking for something else to keep my mind really busy
.HUGS!
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Well, the verdict is in...I have active shingles. The PA put me on Valtrex three times a day for a week. Man, these things are horse pills! She also gave me some cream to put on it and advised me to keep it covered, since I can't seem to keep my hands off the rash. I'm going to a wedding tomorrow, so this ought to be real classy. Ugh. At least I'm not quarantined (shingles is only transmitted through skin-to-skin contact, not by respiratory means.)
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Yeah, having shingles and going to a wedding is a lovely combinations, Poodles. Hopefully, your meds will bring you some relief. Way back in the dark ages, they'd put cotton gloves on kids to keep them from bothering their chicken pox. Maybe that would help you
HUGS!
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